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Comment by Afraid on April 17, 2019 at 3:59am

Hi All - thinking of you all.  I seem to be in middle of flare....not that the hair loss ever really stops.  Terrified about what lies ahead...but trying to seize the day.  It’s a nightmare. Are there any positive stories?? I’m beginning to wonder....

Comment by illustr8r on April 17, 2019 at 12:54am

Atrophy, eh? Grrrreat! Another term I didn’t know that now I have but don’t want. Thanks FFA! Arg!!!!

Comment by Minter on April 16, 2019 at 9:34am

Jules, yes same again!  I avoid cameras like the plague and also tell myself that I won't die from this disease, but it doesn't help much :-(

I also always had thin hair, but there was a lot of it - now it is just thin.  I have pretty much given up on bangs and do a low part and kind of zig zag it a bit to make it look "normal" and that it is supposed to be that way.  The hair fiber powders help a lot to hide the wider then normal part, but doesn't do much for the high, high, high forehead.  It also doesn't help that that the "bald band" is bright white and shiny.  

Kandy & illustr8r, I am Constantly checking out other women's hair, especially the ones my age or older. Now I am also checking out women who have shaved heads or are bald so I know what to look forward to!

I haven't noticed any atrophy around my brows, yet- but I suppose it happening is only a matter of time as well.  I still have a a little brow hair left, but the microblading has gotten much, much lighter though to be honest I prefer it a lighter color so that is ok!  But I will probably have to get it re-done within the year and not microbladed as it doesn't "stay" and is a waste of time money and gives a lot of pain because my skin has thickened up so much she really had to work hard and it hurt, a lot, I just will do the powdered permanent brows, that is what my tech refers to it as.  Irregardless it is still one of the best things I have done for myself, I love my brows! 

Comment by Tessa on April 15, 2019 at 9:19pm

Jules Australia, Minter

Same story here, about 4-5cm loss at front hairline, behind ears one side and going on the other No eyebrows. I'm told I hide it well, but not in my opinion. I have  a very thin fringe starting WAAAAAY back on my head that I think is beginning to look like a man's "comb over", but forwards. I always had extremely thin, straight hair (even as a young women, hairdressers would comment) so there's not much I can do as it just gets thinner and thinner. Like you, I don't look in mirrors and am horrified if I see a photo. Five years in and no sign of the "burn out" I was told would happen!

It is a very depressing disease. However, I keep telling myself: It doesn't hurt (much!) and won't kill me.

Comment by KarenD on April 15, 2019 at 1:23pm

Hello illustr8r,

I have a dent that runs along my eyebrow, the outer third of it.  I had a dent in the other eyebrow long ago when I opened a car door into my face and cut my skin, but that dent has become worse over time.  Then a few years ago I noticed a matching dent on the other side.  My dermatologist said it was normal for FFA patients to get some atrophy around the eyebrow region, could it be that?  So for me I not only have lost most of my eyebrows, but also have a bit of atrophy.  It is pretty wild to keep finding fun little facts of what may happen with FFA.  I though losing the hair around the hairline was bad enough and laugh to find myself wishing that that was the only thing I would have to deal with.  The skin changes, loss of eyebrows/eyelashes etc keeps a person on their toes for sure wondering when will the craziness stop!

Comment by Kandy15 on April 15, 2019 at 1:10pm

I have noticed over the past few weeks that I have a few spots on my legs and arms that are little patches of what looks like ringworm. My sister has psoriasis so I asked if this is how it started for her.  She said no but that she gets those little weird spots too and after a few weeks they just disappear.  I'm hoping that will be the case for me.  I sure don't want anything else to contend with and obsess about. 

My sisters and I went to a strawberry festival yesterday so of course I had to check out all of the hundreds of women there to see what their hairline looks like.  Many my age had bangs so I don't know if they are trying to hide hair loss like me or if that is just the standard old lady (61) year old  accepted hair style.  Most had really good looking hair though.  Not the mess I have.

I have been thinking about PRP or kenalog injections but I think I am too scared.  My dermatologist said some people have good success with it but when I read posts from women who have had them, it doesn't seem to make a difference in the FFA and it has caused dents in their head.     

I hate this disease.  It's a robber of self confidence, self-esteem and joy.    

Comment by Minter on April 15, 2019 at 9:00am

edit to say hair LOSS not hairless - though it is pretty much the same thing!

Comment by Minter on April 15, 2019 at 9:00am

Jules Australia, same- I can pretty easily disguise the hairless around the ears, but the hairline in front is a becoming more and more difficult :-(  and yes, again same! I very rarely look in the mirror when passing by one these days except to get ready for the day.  

It is easier to live in denial!  

illustr8r, I think I'm so used to having bad skin I'm not noticing anything different, though it is also difficult to tell what is because of FFA or what is flaring up because of menopause :-/  

Comment by Jules Australia on April 14, 2019 at 7:31am

Minter, I have lost about the same amount as you  have from the front, around 4cm {ab. one & half inches, maybe a little more}. I have naturally curly hair which has so far helped, to a degree,  cover the loss especially above, in front & behind my ears, but I hate the missing hair in front on forehead. Kandy15, I also often avoid looking in mirror these days. Illustr8r, lately I have had spots on my forehead just above right eyebrow, and my left eyelid that have felt hot & reddish looking; it is just so weird, I am soooo sick of living with this disease, just seems to be one thing after another, ….relentless...….when will it END ????!!!!

Comment by illustr8r on April 14, 2019 at 3:58am

Ladies, any weird things happening to your skin lately? I am getting deep broken capillaries that are always red. I have a prominent one now on my chin. My right cheek is slightly flushed all the time. I can cover it with make up if you don’t look close.

The strangest thing is that I have developed a dent about 1.5 inches long from the middle of my left eyebrow upward. It’s not a frown line, feels different and I don’t have a similar mark on my right side. The dent corresponds with the spot on my brow that is badly scared. The microblading there didn’t take very well and eyebrow powder/pencil barely sticks.

I swear. Every week it’s something new and it’s never good.

(((Hugs to everyone)))

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